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Use of Interoperability Standards and Data Segmentation to Support Patient Privacy Johnathan Coleman, CISSP, CISM [email protected] Duane Decouteau [email protected] DISCLAIMER: The views and opinions expressed in this presentation are those of the author and do not necessarily represent official policy or position of HIMSS. Learning Objectives • During this presentation, participants will learn about the Data Segmentation for Privacy (DS4P) Standards and Interoperability Initiative. The presentation will: – Summarize how standards can be used to electronically enforce a prohibition on redisclosure, which helps providers and patients selectively disclose health information and ensure that the information remains confidential after it is received. – Provide a brief overview of an implementation approach from one of the DS4P pilots: VA/SAMHSA Agenda • Data Segmentation: Definition and Purpose • Examples of Heightened Legal Privacy Protections • Technical Approach • VA/SAMHSA DS4P Pilot • Conclusion What is Data Segmentation? “Process of sequestering from capture, access or view certain data elements that are perceived by a legal entity, institution, organization or individual as being undesirable to share” Data Segmentation in Electronic Health Information Exchange: Policy Considerations and Analysis Melissa M. Goldstein, JD; and Alison L. Rein, MS, Director Academy Health. Acknowledgements: Melissa M. Heesters, JD; Penelope P. Hughes, JD; Benjamin Williams; Scott A. Weinstein, JD Why Segment Data? • Some healthcare information requires special handling that goes beyond the protection already provided through the HIPAA Privacy rule. • Additional protection through the use of data segmentation emerged in part through state and federal privacy laws which address social hostility and stigma associated with certain medical conditions.* • Data Segmentation for Privacy provides a means for electronically implementing choices made under these privacy laws. * The confidentiality of alcohol and drug abuse Patient records regulation and the HIPAA privacy rule: Implications for alcohol and substance abuse programs; June 2004, Substance Abuse and Mental Health Services Administration. Examples of Heightened Legal Privacy Protections (1) • Federal Confidentiality of Alcohol and Drug Abuse Patient Records regulations [42 CFR Part 2] which protect specific health information from exchange without patient consent. • State and Federal laws protecting data related to select conditions/types of data – – – – – Mental Health Data Regarding Minors Intimate Partner Violence and Sexual Violence Genetic Information HIV Related Information Examples of Heightened Legal Privacy Protections (2) • Laws protecting certain types of health data coming from covered Department of Veterans Affairs facilities and programs [Title 38, Section 7332, USC] - Sickle Cell Anemia HIV Related Information Substance Abuse Information • In addition, the rule 45 CFR §164.522(a)(1)(iv), effective 3/26/2013, describes how patients may withhold any health information from health plans for services they received and paid for out-of-pocket. Data Segmentation for Privacy TECHNICAL APPROACH S&I Lifecycle 9 Layered Approach for Privacy Metadata • “Russian doll” concept of applying metadata with decreasing specificity as layers are added to the clinical data. • Privacy metadata uses standards to convey: – Confidentiality of data in clinical payload – Obligations of receiving system – Allowed purpose of use Types of Privacy Metadata used by DS4P • Confidentiality Codes: – Used by systems to help convey or enforce rules regarding access to data requiring enhanced protection. Uses “highest watermark” approach. • Purpose of Use: – Defines the allowed purposes for the disclosure (e.g. Treatment, Emergency Treatment etc). • Obligations: – Specific obligations being placed on the receiving system (e.g. do not re-disclose without consent). Privacy metadata along with payload and transport metadata are used to enable the disclosure patient information. Transport Metadata Summary Document Payload Confidentiality: Restricted Obligation: No re-disclosure Purpose of Use: For treatment purpose Data Segmentation for Privacy VA/SAMHSA PILOT Data Segmentation Using Healthcare Privacy and Security Labels (HIMSS 2013) Advanced technology demonstration of the ONC Data Segmentation for Privacy Initiative, using a standards-based approach for privacy metadata to achieve interoperability and appropriate sharing of protected information, ensuring those who receive it handle it correctly. VA Consent Directive VA plans to use Security Labels to enable enforcement of access restrictions authorized by the patient VA Patients will be able to create online consent directives to: Authorize & Revoke Disclosure to eHealth Exchange and SSA Grant Providers access to their MyHealtheVet PHR VA = Veterans Administration SSA = Social Security Administration PHR = Personal Health Record Privacy Tagged Summary Document MASKED UNMASKED RESTRICTED NORMAL (RESTRICTED// HIV) (NORMAL) Class : N] Class R,HIV N N N N N N N (NORMAL) N Secret Key User Authorization N N (NORMAL) Security Domain Access Control System Security Label conveys Access Control Information about Users and Requested Information User Security Labels are called “Clearances” Information Security Labels are called “Classifications” such as Confidentiality and Sensitivity 17 7/17/2015 Security Labels Bind Clinical Metadata to Patient Consent Medication ID Medication Name 11413 AZT (Zidovudine) Diagnosis ID Diagnosis Name 111880001 Acute HIV Disorder Terminology RxNorm Terminology SNOMED Confidentiality Restricted Sensitivity HIV Confidentiality Restricted Sensitivity HIV Privacy Rule: If Diagnosis=111880001 (HIV) and Medication=11413 (Zidovudine), then Security Label Tags are Confidentiality = R and Sensitivity = HIV HCS Clinical Fact Metadata Example Clinical Fact Diagnosis Clinical Attribute Provenance <Patient Name > Source=<Organization> 111880001 Acute HIV infection (disorder) hadPrimarySource: SNOMED Code Security Label (HL7*) N N Restricted, HIV wasAttributedTo: <Attending> Medications Allergies <Patient Name > 11413 Zidovudine (AZT) N hadPrimarySource: RxNorm wasDerivedFrom: Diagnosis Restricted, HIV <Patient Name > wasDerivedFrom: Encounter N 91936005 (Penicillin) hadPrimarySource: SNOMED CT N hadPrimarySource: LOINC N hadPrimarySource: CPT Restricted, HIV 8053 (Lipid Panel) Laboratory Report 8320 Total Cholesterol 8316 Triglyceride 8429 HDL 7973 LDL Procedure 86689.Z7 (HIV-1 Western Blot) 19 NIST FIPS PUB 188 Security Labels Security Labels are semantically interoperable metadata for a User’s Clearance to access Information classified with the same Label NIST, ISO, IETF and other security label standards, which are widely used in other industries including National Defense, can be used in healthcare NIST = National Institute of Science and Technology; ISO = International Organization for Standardization; IETF = Internet Engineering Taskforce Data Segmentation for Privacy CONCLUSION Conclusion • Data segmentation provides a means for protecting specific elements of health information, both within an EHR and in broader electronic exchange environments, which can prove useful in implementing current legal requirements and honoring patient choice. Please visit the Interoperability Showcase to see live DS4P Pilot demonstrations: VA/SAMHSA NETSMART Showcase Kiosk # 11-1 Showcase Kiosk #26-1 Federal Points of Contact VA : Mike Davis, [email protected] US Department of Veterans Affairs SAMHSA: Richard Thoreson, [email protected] Substance Abuse and Mental Health Services Administration ONC: Scott Weinstein, J.D. [email protected] Office of the Chief Privacy Officer Office of the National Coordinator for Health Information Technology Department of Health and Human Services Thank You! Johnathan Coleman, CISSP, CISM Initiative Coordinator, Data Segmentation for Privacy Principal, Security Risk Solutions Inc. 698 Fishermans Bend, Mount Pleasant, SC 29464 Tel: (843) 647-1556 Email: [email protected] Duane DeCouteau Senior Software Engineer Edmond Scientific Company 4000 Legato Road, Suite 1100 Fairfax, Virginia 22033 Tel: (703) 896-7681 Email: [email protected]